My first few weeks of CPAP - for anyone unsure!

[reolhlains]

I want to post this for anyone, like me, who has read this forum (and everything else available on the internet!), looking for CPAP information prior to trying.

I could write all day on this - about how I found out I perhaps had some form of sleep apnea, why I was so averse to CPAP (I was ridiculously nervous about the whole thing) etc. etc. But that doesn't really help anyone! What I want to do is try and explain how CPAP is working for me - that's what I was most unsure of before trialing.

So, yes, I am on a trial. I was never actually diagnosed with sleep apnea, rather upper airway resistance (not getting enough air in while sleeping) - and I know that I was having apneas for sure - I'd wake up gasping for breath (not often, but often enough) - my heart would be racing - it'd take a few hours in the morning before I could face speaking to anyone etc. etc.!! I tried all the suggestions - and ultimately decided I'd just get on with it and trial CPAP.

I'm presently nearing the end of a four week trial (it cost me only about $100). I was the most nervous person in the world going to the trial - the consultant was amazing and sorted out my nerves. Then it was time to try - and see what CPAP felt like!!! She explained that I could try it - if I thought I could never use it, then I could just walk away. I then had 7 days to have a go without having to pay anything.

When I put it on, I thought - hmmmmm - actually, yes, this is nothing. I used the nasal mask, so not like a full face mask. I was told to try this first and see if I would sleep with my mouth closed and make it work. So - breathing in through the nasal mask felt good - it was set to a pressure setting of 6 - was very tolerable. I didn't have any issues breathing out either. So, during the consult, she raised the pressure to 8 (again, tolerable!), and I went home with my machine set to auto pressure - and me very excited!!

People say the first night is hard (first while is hard!) - I got home (actually I was away with work, so home was a hotel) - and sat with the machine on watching TV for a while - just to get used to it. I went to bed, fell asleep almost instantly, and had no problems at all. Yes, I woke up about 4 times that night- but each time got back to sleep easily enough. I did feel good in the morning!

My AHI during my sleep study was low (less than 5) - I knew that was a one off and it was understated - but I don't think my sleep was "that" bad. For that reason, I was told not to expect to wake up like a completely different person like someone who had a higher AHI might - but I did feel different - good different!

Within about 5 or 6 nights, I didn't even know if I had the machine on or not. I think that's the key thing I didn't realise before trialing - you (well, for me anyway) actually don't feel the machine on when you wake up. I still wake up through the night (I'm yet to sleep all the way though - but last night I only woke once, so it's getting closer!) - when I wake up, I often either forget that I have it on - or think that it has turned itself off. It's only when I take the mask off that I feel the air and reaise it was on! I'd heard stories of waking up though the night and the machine increasing pressure so much that it's a horrible experience - absolutely not in my first month anyway. I don't even notice it any more.

I'm doing soooooooo much more than I was doing a month ago - I wasn't falling asleep during the day or anything like that, but I was keen to get to bed fairly early at night, and stay there until the last possible minute in the morning. I am the opposite of that now!! I've been planning to do things in the evening, have been studying again, have been able to drink red wine again without feeling like I'd have the worst hangover in the world - it's just been amazing.

I had this whole thing in my mind for about 2 years (one year thinking there was something wrong before the sleep study, and a year after). Two years of reading the net, this forum etc. etc. I don't regret not starting CPAP before - I just wasn't ready to. And when I made the decision to trial it, I did so pretty quickly.

I'm not going back though - I had a night in a hotel without CPAP the other night and I was actually worried about not having it!!! I felt rubbish the next morning, and was worried about everything I had to do that day etc. etc.

This trial may be the best thing I have ever done for me - I know people have very different experiences, but trust me - I was a terrified patient - and after one night I have totally changed my attitude!

In short, if you are like me and not sure what to do (I was weighing up mouth guards and all the rest of it) - just trial it - it's just been amazing for me!!!

Please feel free to hit me up with any questions if you are in the same boat - I am no expert, but I know how I feel and what I've found!

[chunkyfrog]

Yes, this actually can be "nothing", or at least feel like nothing---
which is (for me) a huge improvement over waking many times a night, heart racing,
gasping for breath; and waking with a horrible headache.
If I woke without a headache, I would get up and stay up, even if it was several hours early.
Anyone who lets their vanity or fear stop them, has no idea how much their life can improve.

[D.H.]

In the U.S., it would be illegal to do this (not that it doesn't happen). You would need a sleep study to determine if you have Sleep Apnea to begin with, then you would need a study to determine that CPAP will be effective and at what setting. Sometimes, it's done in the same night which is called a "split night study".

BTW, CPAP is an Australian invention!

[Pugsy]

In the U.S., it would be illegal to do this

Illegal to do what in the US? Self treat? No, it's not illegal to self treat or even self diagnose. Might not be ideal but it's not illegal. Treat for UARS? No, not illegal to do what the OP is doing for UARS treatment.

The only thing "illegal" is for a DME to make changes to a machine without a doctor okaying it and selling without a RX.
Those "illegal" things only apply to DMEs...not to the patient.

[reolhlains]

I should clarify, I am not self-treating - well, not really!
I did a in-hospital sleep study (cost me $1,000 pretty much) - the results were low AHI, but moderately high RDI (and very little REM sleep).
The suggestion was try loosing a bit of weight - I could (should!) loose 5-10 kgs - not a huge amount, but the consultant reckoned that might make a difference.
I really tried hard and couldn't shift anything - I concluded because I wasn't getting sleep (so I'm keen to see what's going to happen to my weight now!).
I spent a year procrastinating - after weight loss, the Dr suggested a mouth-guard. I have a friend who uses one (he had a very high AHI and reckons the mouth-guard has sorted his issue - I'm not convinced!). But I decided to try CPAP anyway.
I went back to the Dr - he wouldn't refer me to the CPAP provider he uses without another consultation (and sleep study) because it had been over a year since I saw him (it was 14 months). I wasn't going to do that - I knew nothing had changed since the last one (and I knew if I did another sleep study, the results would again be skewed cause I would inevitably not sleep).
So I went to the provider myself and thankfully they were much more helpful and happy to do a trial for me. They will send the results to the Dr - I have no idea if he'll give me a prescription or not - most probably not given I didn't pay his fee again!!
I probably need to find another doctor - but, in saying that, everything is going so well, and the people I am doing the trial with are monitoring the results remotely and keeping in touch with me. Of course, they want to sell me the machine for $3,000 - which ain't going to happen!!

[palerider]

I should clarify, I am not self-treating - well, not really!

there's absolutely nothing wrong with self treating... no matter what some people try to scare you into believing.

[Shell_78]

I'm on my 4th night of a week trial. Or at least I go back to see the sleep tech after the week of use to see how I went. But my went rental cost me $150! And if I want to keep on renting it, it's $50 a week.
I really just wanted to see how I coped using a machine cause I have a big issue with feeling 'trapped', but I haven't found this a problem.
I also wanted to see if it improved my bedtime hr which is a major issue for me. So far it hasn't and the sleep tech said it wouldn't.
Anyone else struggle to get to sleep until the early hrs of the morning before they went on a machine???

I'm probably just slow to react or perhaps it's because I can't sleep til early hrs of the morning and I'm therefore not getting enough hrs of sleep for me, but I'm not getting that 'feeling good' in the mornings from using the CPAP. I wake up feeling the same as before I went on it......yawning and tired.
Today I woke feeling the worst since going on it - shoulders and neck are all achy cause I feel like I can't sleep in my natural positions.
And I still wake up a lot - same as before the machine. I believe I have more going on, but I don't think the sleep tech out here is overly knowledgeable. Better off with my Dr!

[Holden4th]

I'm on my 4th night of a week trial. Or at least I go back to see the sleep tech after the week of use to see how I went. But my went rental cost me $150! And if I want to keep on renting it, it's $50 a week.
I really just wanted to see how I coped using a machine cause I have a big issue with feeling 'trapped', but I haven't found this a problem.
I also wanted to see if it improved my bedtime hr which is a major issue for me. So far it hasn't and the sleep tech said it wouldn't.
Anyone else struggle to get to sleep until the early hrs of the morning before they went on a machine???

I'm probably just slow to react or perhaps it's because I can't sleep til early hrs of the morning and I'm therefore not getting enough hrs of sleep for me, but I'm not getting that 'feeling good' in the mornings from using the CPAP. I wake up feeling the same as before I went on it......yawning and tired.
Today I woke feeling the worst since going on it - shoulders and neck are all achy cause I feel like I can't sleep in my natural positions.
And I still wake up a lot - same as before the machine. I believe I have more going on, but I don't think the sleep tech out here is overly knowledgeable. Better off with my Dr!

I also rented before buying because I wanted to make sure that PAP therapy would work for me. It does and now I have my own machine. I rented for over 6 months and made adjustments based on recommendations form the great people on this forum. Initially things were rough but by following the advice from here things improved significantly. I found this out when I didn't use my machine one night and felt so bad the next morning. I still haven't reached optimal sleep but it will happen and so it will for you if you persevere.

So get Sleepyhead software and post your results for us to look at and make suggestions for improved sleep. Better off with my Dr! No, you're probably better off talking with the very knowledgeable people on this forum.

[reolhlains]

Hey Shell - where are you? When you say AU, I'm not sure if that's Australia or an abbreviation of a US State (although I can't think of any!).
My trial is $99 for the month - including unlimited swapping of masks (I've stuck with the first one they gave me) and appointments - again, I only needed the first one but they have called a few times to check in. After the month, it's $125 per month to rent (it's a brand new DreamStation complete with 4G modem etc.).
I noticed in a shopping centre the other day a free one month trial!
Maybe after your initial week you could do a month with the people I'm with - let me know if you want their details (they have places in every state).

I was also just wanting to see if I could handle CPAP (I could see that I was going to need it at some point) - I'm guessing we are about the same age going by your username - so I was like, erm - I'm young and reasonably fit and what's going on!! The sleep tech I'm using (who is just amazing) was telling me when she first started going out with her boyfriend she immediately realised he had sleep ap - and gave him a CPAP for his 27th b/day - he's not stopped using it since!

I'm sorry to hear your having sleep onset - I go to bed and sleep within about 5 mins. I am no expert - presumably you have considered caffeine/exercise/no TV in bed etc.

[Shell_78]

When I say, I'm better off with my Dr, I mean rather than the sleep tech. My Dr uses a CPAP machine or at least she use to a couple of years ago.
But I know the people here will still have a better range of knowledge!

Will the sleep tech know if I remove the SD card to upload the info on my computer?
I do have SleepyHead already installed - prepared ahead for when I buy my own machine next year.
I have that MyAir thing, but kinda find that somewhat useless...it's taking my mask off for the loo, drink or if I have an issue that stops me getting 100 points each night.


I'm in SE QLD.
Wow, I got ripped off huh! Lol.
That would be great. I'm sort of in limbo at the moment. Part of me says, keep going on a rental - which will make saving for my own a bit slower. Or go without from wednesday to in the new year when I get my own.......funds permitting.
My mum has sleep apnea (central and obstructive), so she gave me a brief run (just during the day) of the different masks she has on her BiPAP machine - which tried to kill me at first! She turned the air way down and the Swift FX nasal pillows were the easiest for me to breath naturally. So that's what I requested from the sleep tech. I don't seem to open my mouth - when I tried opening my mouth before sleeping, I choked. So pretty sure it would wake me if I did open up during the night...lol.
I am considering purchasing the P10 nasal pillows. It's just an expensive experiment, although cheaper buying in from US.

I'm 37.....at least for another week.
I've had a problem sleeping before 2:30am for the past 2 & 1/2 years. I'm really tired during the day and will fall asleep in front of the tv early evening (around 6-7pm) for up to a few hours if I only got 3-4hrs sleep that morning. On days where I get 5-6hrs, I'll still be really tired and yawning my head off, but can't sleep until the 2am comes around. Once it does, I will fall asleep pretty quickly - usually. Trouble is, I have always needed a good 8-9hrs to function at my peak and as much as I try to sleep to later in the morning to get my hrs, I can't. Until a month ago I could sleep til 10:30am. Now my body insists on waking around 8am.

I don't drink coffee or soft drinks.....so no caffeine issue keeping me awake. I do have a tv in my bedroom and I did a trial of not turning it on for a couple of weeks to see if that made a difference. I even tried reading cause I know a lot of people find that makes me tired or winds them down. Neither worked.
I actually find the tv makes me sleepy cause I curl up in bed and completely chill.
I got one of those Fitbit watches to help me get my butt moving more and I used that as a challange in the evenings for exercise to build my steps up. Thought it might tire me out trying to do 2000 steps in the last 30-60 mins. Nope.
I've noticed my sleep tracking (movements) on it hasn't changed much since going on the CPAP. I thought I might be a little quieter at night considering I can breath....lol.
Perhaps in time when things settle. Because of my 'denial', I think I was hoping for a miracle.....hehe. Never been known for my patience.

[Pugsy]

Will the sleep tech know if I remove the SD card to upload the info on my computer?

Nope. Not unless you tell.
SleepyHead does absolutely nothing to the SD card..doesn't add or remove anything.

[Shell_78]

Awesome. Thanks for that.
I'll have to check that out later today. Or perhaps now......not sure I'll get much sleep after the little episode I just had with the machine! It's trying to turn me off.....lol.

[reolhlains]

Oh Shell - it sounds like you are having a tough time with it and I feel for you. Keep trying all the amazing advice on here - that's what I am doing!
$50 a week is ridiculous - the place I'm using it expensive, and that's under $30 a week (for a cracking machine). I'll send you the details - I'm sure there are even cheaper options (i.e. renting a lower spec machine/older machine etc.). There is no way I want to pay Australian prices - it's crazy!!
On a nicer topic - I'd LOVE to be in SE QLD!!!

[Shell_78]

Ohhhh, I sure am! Thanks.
This morning was my worst time - machine wise. It tried to kill me...lol. I was later getting to bed as it was (after 3am) and then the darn machine tried pumping far more air into me than I can cope with. My pressure is open - 4 to 20 at the moment cause the sleep tech wants to see where I sit. Each morning the machine has said my pressure was around 8.5. But when I looked at the screen as it was force feeding me, it said the pressure was over 10. I only lasted just over 3hrs the first night cause it went over the 10. I know it sounds weird, but when it's forcing too much air into you that you're not able to take in, it makes you feel like you're actually suffocating. That then makes me feel sick. So I stopped it for an hr to settle down. My chest felt like my cat was laying on it......was tight and heavy.

When I tried again at 4:30am, same thing happened. I tried to push through it and sleep, but it wasn't happening and my anxiety was just building more and more til I turned it off for the morning.
Feel like absolutely CRAP this morning, but always have done when I would fall asleep after 5am. <--------- justification.....hehehe. I'm clutching onto that denial!

Yeah, I'm definitely not renting this machine for any more time. Not after the crappy experience so far and at that price. I'm feeling rather low about the whole situation at the moment. Maybe after I've been off the machine for a few days and I've had time to stew things over later this week, I'll be able to go with another one.
Originally, I thought maybe I could borrow mums spare one, but they are too forceful for me.....she uses BiPAP.
Thank you for that!

Lol, I'd LOVE to get out of QLD. Too darn hot up here. I'm in love with Sydney after my holiday there in 2012.

[palerider]

Ohhhh, I sure am! Thanks.
This morning was my worst time - machine wise. It tried to kill me...lol. I was later getting to bed as it was (after 3am) and then the darn machine tried pumping far more air into me than I can cope with. My pressure is open - 4 to 20 at the moment cause the sleep tech wants to see where I sit. Each morning the machine has said my pressure was around 8.5. But when I looked at the screen as it was force feeding me, it said the pressure was over 10. I only lasted just over 3hrs the first night cause it went over the 10. I know it sounds weird, but when it's forcing too much air into you that you're not able to take in,.

it'd help if you'd discard this incorrect idea that the machine is "forcing air into you".

10cm is just a tiny bit more than 8.5.

put water in a glass, stick a straw four inches into that glass... blow bubbles... you've just blown MORE than 10cm of pressure.

the 10 on the machine is 'centimeters of water', 10cm is around 4 inches..... it's hardly any pressure at all.

secondly, your machine does not force any air into you. the only air going in, and out of you is what your lungs are pulling in, and pushing out, just like all day long all the machine does is create a tiny bit of pressure to keep your airway open, so your lungs can pull the air in.